Can anyone please tell we what to expect at the end of CHF - i am caring for a 75 year old lady, who i might add is lovely and knows she is dying.
She has been rated as end stage for 18 months now, but has gone down hill over the last 6 months. She is always sleeping, vomiting, and had severe SOB - she has oxgen in her house that she uses constantly. She is in so much pain (her feet and legs) uses morphone liquid and S/R tablets amongs other numerous medications. Her kidneys work off and on, has been hospitalised numerous times.
She says she knows the end is near and her doctor said that it would be a blessing if she passes in her sleeep because if she does not she will have a terrible death - can anyone elaborate on this, i just do not know what to expect.
I am sorry you have to go through this. But like Sue said, you are so wrong about her not knowing you are there, because, she does know and I am sure its comforting to her.
Keeping you, your Mom, and your family in my thoughts and prayers.
Just a thought, but sometimes, people "hang on" because they haven't gotten "permission" to go from their closest loved ones. Have you told her its ok to stop fighting and its ok to go that you will be ok? Your mom just might be waiting for the "ok" from you.
I agree with what CT Pixie and Suesquatch said. She knows you are there and needs your permission to move on. Keep talking to her and let her know how much you love her. :icon_hug:
I am very sorry and know what you are going through since I went through the same thing with my Dad. I believe they can still hear, let her know you love her, you are with her, hold her hand but ALSO get some rest yourself, trust them to call you with any change.
Specializes in Hospice, Palliative Care, Gero, dementia.
Joining all the other voices in terms of encouraging you to continue to do what you are doing -- hold her hand, talk to her, hug her -- don't be afraid to tell stories, laugh (it really is ok!), cry...your presence and that of other people who love her and care for her is a wonderful gift, and from all we understand, she is aware of your presence.
I too wondered if the twitching could be connected to her MS dose -- myoclonic jerks can be signs of hyperalgia.
As to your question of how long can she go on w/o food or drink? Well, depending on the concentration of the ms drip, she is getting some hydration from that, and people can continue on longer than you would imagine -- sometimes it becomes more of a heartache for the family than the person who is dying.
It is also very hard to keep skin intact when nutrition is down to nothing -- turning regularly is good, but be aware that if she is having pain/discomfort w/turning, the schedule can be let up some to keep from disturbing her -- sometimes the turning, if not done carefully and if there is sheering can exacerbate a situation. Sometimes a "turn" can be as little as a slight change just to relieve the pressure -- and check to be sure that other boney places are being protected -- if she's on her side, are there pillows between her legs? (knees, ankles can also be a problem)
Also if she has HF, what has been the position she has been sleeping in? It may be good to keep her upper body somewhat up too to make her breathing easier. Is she on O2? Is it humidified? While that can be a comfort measure b/c of the drying effect of the air, if she is sounding moist you may want to stop the H20 (it's a trade off, and I've gone both ways depending on the situation).
Finally, oral care -- be sure shes getting regular swabbing of her mouth. And skin care -- as she gets dryer her skin also drys out and become even more frail -- putting some lotion on can be a way of both providing loving touch and making her more comfortable.
Another thought -- if there are times that family is not at bedside, is there music that she likes? Sometimes having special music playing in the room can be a comfort as well.
As stray dandelion said, take care of yourself as well -- you owe that to your mom who spent so much time taking care of you to do that. And/or let others take care of you as you take care of your mom.
'we don't want you to hold on for us. we don't want you to fear that you are abandoning us'
none of us want you to suffer for us. we don't want you to hold on for us. we don't want you to fear that you are abandoning us. we know your time has come. we want you to complete your journey. we want you to be at peace.
i've said similar words to both grandmothers and mil... saw how it helped them relax and ease their breathing and pass on within a day thereafter. telling her you love her, will be ok with bereavement support is a great gift.
please ask for help from palliative care team if you are unable to say them yourself and need someone to say them for you..... when i worked hospice team would initiate conversation and often helped those holding out/struggling at the end along with family members present.
Thank you to you all for your wonderful support, it helps a lot.
I have spoken to mum this evening and told her she is very much loved and that she is the best mum. I also told her that dad will be waiting for her and not to worry about us, we will all be ok.
She is not having any additional fluids in her morphone pump, just maxillon (sp?) for the nausea.
She is being kept fresh and clean, her mouth is being wiped with special buds, she also has cream on her lips to stop them from drying and blistering.
Mum is still on oxygen - thats all she has.
She has our love and we hope that is enough to help her through this.
Today a CD player was put near her bed and soft calming music is being played.
Even though we have plenty of time to accept this was going to happen, i don;t think you are ever ready for it.
I am going to miss my mum so much - she is the greatest.
Thanks again for all your kind words and suggestions as to how we can help her pass in peace.
Specializes in Hospice, Palliative Care, Gero, dementia.
Monica, I'm glad our words have helped -- and it's true, you can prepare, but you can never be prepared.
I will often draw parallels between birth and death -- these are the two great passages which we, as much as we care for those who go through the experience, we cannot control the journey, we can only be present with our love.
"Letting go" is often hard. Letting go not only of the dying person, but letting go of our expectations and our desires.
Remember to breath, and remember that you not only are sharing your love w/your mum, but your are also loved.
Mum is still fighting - they have increased her morphine dose to 80mg via the pump and at times still give her an additional 5mg when she needs it. Mum keeps trying to get out of bed but is so weak and if she tries to stand will surely fall, so they have put rails on her bed. She is still very restless and jerks uncontrolably.
They say it will not be much longer, this was said to us last week Tuesday - it breaks our hearts seeing her like this and we just hope she is not in any pain.
I saw her naked yesterday for the first time in a week and just cried, she is so emaniated. She is having the occasional sip of water, would not even equal half a glass per day, she still has not had any food for over a week.
We are keeping her clean and comfortable and just being there for her - can we do anything else?
Specializes in Hospice, Palliative Care, Gero, dementia.
Monica, I am still wondering if she has too much morphine on board (because of the jerking).
Ask if there is any way they would consider switching to another opioid.
I know it's hard seeing her seem to just waste away in front of your eyes. Do you have people who you can turn to for support? Is there a chaplain connected to your mom's care? Even if you're not religious, these are amazing people who can be there in amazing ways.
The morphine has been increased over the last 9 days because of the pain - mum will grimmace and become agitated when she is in pain. If the nurses have to give her extra morphine 3-4 times during the day, the doctor ups the dose in her pump. I have asked if the morphine can be changes for another drug or if the dose is too high, they say she needs it. The nurse said this morning that they may request something to relax her too - something they can add to the morphine pump which will help with the jerking. One nurse said that the jerking is not unusual in people who are dying, its just hard to watch.
Monica
Thanks for replying - i seem to ge more answers here then from the nursing home
Specializes in Hospice, Palliative Care, Gero, dementia.
Monica, I'm not saying that her pain shouldn't be aggressively treated, I'm just saying that sometime people do not realize that increasing an opioid, particularly morphine which creates a lot of metabolites can lead to a situation where the pain is actually made worse.
A common way of dealing with this is switching to another medication, especially a synthetic opiate like hydromophone (diludid), lowering the dose, and then cautiously going up.
Adding something like ativan (to relax her) can help, but rotating your opioid and going down a little bit may be helpful too.
And it is true that sometimes the things we observe are more painful to us than they are to the person experiencing them.
A couple of references for you (and to share w/the nursing home) are:
CT Pixie, BSN, RN
3,723 Posts
Monica
I am sorry you have to go through this. But like Sue said, you are so wrong about her not knowing you are there, because, she does know and I am sure its comforting to her.
Keeping you, your Mom, and your family in my thoughts and prayers.
Just a thought, but sometimes, people "hang on" because they haven't gotten "permission" to go from their closest loved ones. Have you told her its ok to stop fighting and its ok to go that you will be ok? Your mom just might be waiting for the "ok" from you.